Re: disability

["Nancy K. Porter" <nkporter@xxxxxxxxxxxxx>]

Murray,

I guess you and I are a few of the "lucky ones".  While I do not yet see my
self as particularly disabled, I am aware of being increasingly LESS able
by small increments over a period of 6 months to a year.  I am slower in
all things. I must be more aware and cautious and must find alternate
routes and methods to manage my life and my work.

It seems a shame that the word "progressive" is applied to PD.  There is
certainly  NO "progress" involved in the course of the disorder.  I also
object to referring to PD as a disease.  Dr. Parkinson should have named it
"Parkinson's Disorder".

Nancy K. Porter

Ps,.  Welcome back to nancy degrazia.  I think there are maybe 5 of us
Nancys on board now.
NKP

On Saturday, March 29, 2003, at 11:16 PM, Murray Charters wrote:

> On 28 Mar 2003 at 16:04, Victor P Varsak wrote:
>
> > Scott, how I can so relate to your feelings. each day I wonder how
> > affected
> > my activities will be because of PD.  I was diagnosed this year and the
> > diseases has progressed very quickly.  As a matter of fact, I have totally
> > lost my ability to type with my right hand so I now rely on the computer
> > to
> > do the typing for me.the software is not perfect but it works.
>
> Hi Scott, Victor, Maggie, Bob, and "Others"....
>
> Over the years I too progressed through altering the double click
> timing, to using the mouse with my left hand, to typing almost
> exclusively with one hand, to typing almost exclusively with one
> digit... but I have not lost the ability to type.... albeit
> slower....
>
> > They say that the younger you are the quicker the disease progresses. I'
> > m not
> > comforted in knowing that and struggle to deal with the diagnosis. I am
> > forty-eight years old and Parkinson's disease has affected my entire life.
>
> "They" say lots of things... Sometimes "They" are correct, but often
> "They" don't know what "They" are talkin' about!!  Parkinson's is
> very much an individual disorder in that no two individuals are
> alike...  Generalities like the above simply do not apply to
> Parkinson's in my view.
>
> I first visited a neurologist at age 38 after several years of
> unnerving falls, memory losses, localized numbness and tingling...
>
> "They" thought I had early stage MS.  I didn't...
>
> Some years later when I was correctly diagnosed Parkinson's "They"
> thought I would have to quit work, give up driving, sell my car, get
> wheelchair accessible housing, etc.  I didn't...
>
> I sought a second opinion and met one of the nicest and most astute
> neurologists, Dr. Barry Snow of Wellington, NZ
>
> He had a profound influence on my mindset, advising me to think
> positively, and to "manage" my Parkinson's with considered decisions
> on when to start meds, when to stop driving, when to stop work, etc.
>
> Parkinson's is not like a broken leg or a stroke in that immediate
> intervention is not paramount.
>
> That said, Parkinson's IS progressive and managing your Parkinson's
> is a must.
>
> What I'm attempting to say is that there is time to make decisions,
> time to manage, time to deliberate.... Just because you have symptoms
> for years, and then one day have a name for your symptoms (dx.
> Parkinson's) does not mean you have to instantly turn your life
> upside down. ie. you did not take any meds and managed up to dx
> day... and will possibly manage for some time without meds... you
> drove without incident up to dx. day... and will possibly continue
> without a problem for some time...
>
> I'm approaching 59 now and I still work, drive, and manage my
> Parkinson's...
>
> I've been on ever increasing dosages of meds (like Greg Wasson says I
> don my chemical camouflage costume every three or four hours).
>
> As others have said this is a designer disease.  Approach disability
> cautiously from a very informed position  as this decision is likely
> irreversible.
>
> I've checked and I qualify for disability in every respect.  However,
> I find working and keeping very busy to be therapeutic.  My employer
> is fully supportive, so I have chosen to continue full employment.
>
> I did sell my personal car a few years ago. It was only used for 2 or
> 3 thousand kilometers a year.
>
> We did move out of the 'burbs and into a low maintenance downtown
> condo several years ago.  I like the 5 minute commute, no rain
> gutters to clean, no leaves, no mowing, no major work at all...
>
> > I have had to make adjustments in all aspects of my life and I am dealing
> > with the depression that follows as a result of limited capabilities.  It
> > is very difficult to get a loved one to understand what impact this
> > disease
> > has on one's life. But, to answer your question, yes I have many ups and
> > downs physically and psychologically.  The medication helps but the
> > disease
> > rules.
> >
> > Victor
>
> I too made adjustments, on my own time, my decisions...  The meds
> help but attitude rules!!
>
> regards ........ murray
>
> * * *
> Murray Charters <mcharters@xxxxxxxxxxxxxx>
>
> * * *
> Murray Charters <mcharters@xxxxxxxxxxxxxx>
>
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